Finding Strength Through Adaptation
Amanda Downs does not want pity because of her condition. She tries not to wallow herself, either. However, she does appreciate offers of support and cooperation with her limitations. While Amanda, 42, is now mostly adjusted to having multiple sclerosis (MS), it hasn’t been an easy path.
Amanda, who lives in Albany, Georgia, first began experiencing symptoms three years ago and was diagnosed the following year, at age 40. At the onset of her symptoms, she felt a persistent numbness and pain. Then it got worse. “I was cooking and my right hand just gave out, and I dropped the pie. And I was like, ‘Nah, something’s not right.’ So I went to the hospital, and they tested me,” Amanda says.
Initially, the providers she saw assumed that Amanda merely had a pinched nerve, and referred her to a neurologist for further testing and treatment. However, the treatment proved ineffective, as the diagnosis was wrong.
That same neurologist then ordered a computed tomography (CT) scan and magnetic resonance imaging (MRI) of Amanda’s spine and brain. She was told that it would probably be a few days before the test results were ready and to follow up with her doctor when they were. But not even an hour later, Amanda received a call telling her to return to the hospital: The testing had revealed plaque on her spine. Her neurologist then informed Amanda that she would need to be admitted to the hospital for further testing—including a spinal tap. In total, Amanda spent five days at the hospital. That was when she learned she had MS, an autoimmune disease that damages the nerves and affects communication between the brain and body.
Loss of control, lack of empathy, and ineffective treatment
While Amanda’s diagnosis process was a fairly straightforward experience, finding effective treatment and care was not. Her prior good health meant that Amanda was unused to navigating the often-confusing and frustrating world of health care. Her difficulties were compounded both by a lack of knowledge about MS and by suddenly facing the reality of having an incurable condition. There were also problems with the neurologist.
The first treatment prescribed to Amanda was a series of thrice-weekly, self-administered shots. Not only did this not help her MS, but the shots made Amanda feel worse overall. She remembers crying every time she had to administer an injection. “It was real bad. I couldn’t do anything when I was doing the shots,” she says. “I couldn’t cook. I couldn’t drive. I could barely be alone, because they just had me that sick.”
This further loss of control and ongoing pain worsened Amanda’s already-fragile mental state. During a follow-up visit with her neurologist, she mentioned the issue.
Unfortunately, the neurologist proved unwilling to listen to Amanda’s concerns both about the medicine’s ineffectiveness and its adverse effects on her mental health. Looking back now, “I just feel like he should have been more supportive, and more understanding of how I was coming into this situation,” she says.
But instead of receiving support, Amanda was brushed off. She felt the neurologist believed she needed to ‘suck it up’ and accept things as they were. “The day I left his office crying and upset, I decided that I wouldn’t go back to him again,” Amanda recalls. After that, she went without medicine for a year, until she started going to the Mayo Clinic in Jacksonville, Florida.
That proved to be a turning point in the quality of care she received.
A new doctor, a new leaf
Amanda’s current doctor at the Mayo Clinic, Iris Marin Collazo, MD, couldn’t be more different than her previous one, Amanda says. Not only does Amanda have a treatment regimen that she is satisfied with—in the form of ocrelizumab, an infusion given every six months—she feels listened to as well.
Marin Collazo “is very caring. She never tried to make my illness [seem] like it’s a problem. She really is attentive and hands-on with her patients,” Amanda says.
This proved especially important when Amanda came down with COVID-19. As ocrelizumab weakens the immune system, Amanda’s COVID-19 diagnosis was very concerning. But her doctor and other staff made sure to check on Amanda and kept in contact with her until she recovered: “They really care for their patients, and they go above and beyond,” she says.
Pathways to success
Along with the new medication and doctor, Amanda has made other adjustments to lessen the challenges of having MS. Something many healthy people do not give thought to is their mobility. For Amanda, retaining the ability to walk is less of a comfortable assumption and more a lingering question. Simply being able to go about her day relatively unimpeded is a blessing, especially since she knows others with MS who cannot do so. A first cousin also has MS; hers is more severe than Amanda’s because she went longer without treatment.
Amanda notices that her conversations with her cousin are different from those with healthy relatives because “she’s been there. She’s had the worst part of MS.” Although Amanda is part of several online groups for individuals with MS, she would like to visit a local and in-person support group.
One of her favorite activities is going on vacation, especially to Florida’s beaches. However, intense weather conditions—strong sun, rain, cold—all aggravate her MS. “With me wanting to get out and go to the beach and stuff, I normally have to do that at sunset or before the sun comes up,” Amanda says. “I can’t stay out on the beach like I used to when the sun is blazing, or I can’t go to the pool when the sun is blazing. So I have to adapt.”
Even if outsiders may not understand every aspect about having MS, that doesn’t mean they can’t be educated about it and learn how to support a friend, family member, or neighbor living with the condition, Amanda says. On her bad days, she wants prayer; on her good days, acknowledgement. She feels blessed to have a strong support system of family and friends, including her husband of 15 years, Melvin, and emphasizes the importance of talking about your limitations openly with loved ones. Communicating about your needs allows them to “go and do stuff that will accommodate you on the days that you’re not doing good [so] you’re not left out,” she says.
Moving forward and through
Some of Amanda’s favorite activities are cooking—especially soul food and alfredo pasta—as well as listening to music. Her favorite genre is “oldies but goodies,” and her favorite song is Whitney Houston’s “I Didn’t Know My Own Strength.” In addition to Florida’s beaches, Amanda would someday like to add Mexico to the list of places she’s visited. Along with her support system, both online and in person, Amanda takes strength in her Christian faith and prays frequently. One thing she loves to tell people is that, “I have MS; MS don’t have me.” That is essentially Amanda’s philosophy: adaptation—while not always comfortable—is necessary.
Acknowledging what you still can do is part of this. In addition to her hobbies, Amanda exercises and cleans her house when she has the energy. She is also a believer in the credo that looking good will make you feel good. This is not to say that there are never bad days, or that living with MS is easy—it isn’t. “But life has to go on,” Amanda says. “And you just gonna have to be here first with it. And just appreciate the good days. Press on, moving forward with the bad days.” While MS may be incurable, it is not unlivable.